Special Concerns of Persons with
Young-Onset Parkinson’s Disease
Stan is 44 years old and lives in Madison, Wisconsin, with his wife Ellen and their three children, two dogs, two cars, and a mortgage. His high-pressure job as an industrial engineer pays $68,000 per year. Until two years ago, Stan’s biggest worries were paying the bills, helping move his mom into a retirement center, and the chaos of raising teenagers.
Then Ellen began questioning the occasional tremors in his left hand. Stan’s left foot seemed to drag slightly, particularly when he was tired, and his boss complained that his handwriting had become too small to read. At Ellen’s insistence, he made an appointment with his family doctor, who said, “Although there’s probably nothing to worry about, you should see a neurologist just in case.”
The neurologist said Stan was “awful young to have Parkinson’s disease” but ran a battery of tests to rule out other maladies and finally determined that Stan should see a movement disorders specialist in Milwaukee.
The movement disorders specialist said Stan did indeed have Parkinson’s and would benefit from starting on a low-dose medication to control symptoms. The specialist said, “It’s not fatal, though there is no cure. We can treat your symptoms, so don’t worry.”
“What now?” Stan agonized during the long trip home. • Will I be able to keep working – should I tell my boss? • How will Ellen cope with this?
• What should we tell the kids? • Is it safe for me to drive? • Could I become an invalid? • Can I even deal with this? The questions kept coming…
Young-Onset PD Diagnosis
Most people do not think of Parkinson’s as a disease of the young, but it is estimated that five percent of all persons with Parkinson’s are diagnosed before age 40, and 15 percent are diagnosed before age 50. The complicated issues of how best to share the diagnosis, when to start medications, and concerns about financial security and job performance all have different implications when one is young.
Clinical features of persons with young-onset Parkinson’s disease, or YOPD, may vary from those of their older counterparts. Thirty to 50% of young onset cases begin with dystonia, an
uncomfortable stiffening or “drawing up” of a muscle group. Dystonias of the foot and calf are common in younger persons with PD. Tremor appears to be slightly less common in younger people, though it is still one of the most troublesome symptoms. Tremor can interfere with routine activities such as shaving, dressing, writing, and many other tasks that require fine motor coordination. Many young people with Parkinson’s who are still active in the workplace and community affairs also report that tremors are an embarrassing visible reminder of their disease. Younger persons with PD are thought to develop earlier motor fluctuations and dyskinesias (involuntary writhing movements) in response to levodopa, the medication most effective in treating Parkinson’s. However, overall tolerance to antiparkinson medication and general prognosis (the likely course of the disease) appear to be better than in older people. In part, this may be due to other chronic health problems in the elderly, such as arthritis and heart disease, which can further compromise mobility.
Young-Onset PD Prognosis
Inherent differences in the physical condition of middle-aged vs. older adults do not seem to completely account for the difference in disease progression between the two groups. One measure of disease progression is disability, which refers to an individual’s limitations in performing activities of daily living. In one study, older persons with PD had about 80% greater disability compared to younger persons when assessed during their fifth year of levodopa therapy. Older people with Parkinson’s also appear to have significantly more difficulty with cognition. Cognition refers to an individual’s mental status. This includes the ability to reason, remember, and exercise good judgment. However, this is a difficult comparison to make, since aging alone is the number one risk factor for cognitive decline.
Parkinson’s Disease in the Workplace
It is estimated that 25-30% of people diagnosed with PD are still active in the workforce. Some continue full or part-time employment for many years. While the Parkinson’s diagnosis does not necessarily call for early retirement, it does call into question how you can best do your job and minimize work-related stress.
Try to approach your job from a new perspective. Make an outline of your overall responsibilities, then break each area down into individual tasks.
Next, consider whether or not your symptoms will interfere with your ability to carry out each task. Look for alternate ways of doing things. Try to create a schedule that enables you to address difficult or challenging assignments during your peak performance periods, and set aside specific hours for time-consuming efforts like writing reports.
If you believe your company is one that might discriminate against someone with a disability, you are not legally required to mention your diagnosis to your employer as long as you can adequately perform your work. Legally, making the necessary environmental and workload changes to accommodate special needs is part of the responsibility of your employer. This is an individual decision and often a matter of finding the best time to share your situation.
The Americans with Disabilities Act (ADA) entitles all qualified persons the right to a job, regardless of disability, and requires reasonable accommodations in the workplace for persons with disabilities. Reasonable accommodations include making existing facilities used by employees readily accessible to and usable by individuals with disabilities; job restructuring; part- time or modified work schedules; reassignment to vacant positions; acquisition or modifications to equipment or devices; and other similar adaptations. Most reasonable accommodations can be made at minimal cost to employers.
In terms of seeking a new job after you’re diagnosed with PD, the ADA dictates that employers may not inquire about disability until after reviewing all job qualifications and making a conditional job offer. Even then, you are required to answer questions about your disability only if it might affect performance of specific job functions.
For more information on your rights under the Americans with Disabilities Act (ADA), visit www.ada.gov or www.dol.gov/odep.
Family Matters
Many younger people with Parkinson’s have young families, and the diagnosis affects all members of the household. The well spouse may already by wearing multiple hats as co-breadwinner and parent, and now must add care partner to his or her identity! The spouse/partner may have their own health problems to worry about in addition to the concerns of the person with PD. It is a complicated situation that requires patience, stamina, and creativity from everyone involved. Another dynamic unique to YOPD is that older parents are often shocked to learn that a middle- aged child is diagnosed with a condition usually associated with the elderly. Their apprehension can build if you are someone on whom they’re dependent for emotional or even financial support. Marriage is the relationship most often studied and referenced in the literature on caregiving. The care partner of a young or middle-aged person with PD faces particular challenges. The frustration of dealing with incorrect or delayed diagnosis can take its toll. Some couples are relieved to finally get the diagnosis of PD, because it is less terrifying than the alternatives they’ve imagined or just not knowing.
It is important for couples to keep an open dialogue about the feelings and experiences of living within the new parameters imposed by Parkinson’s. Eventually the healthier spouse may need to assume some of the tasks and roles in the family previously managed by the individual with PD. This is an ongoing negotiation. Even if you continue to manage all your previous responsibilities, you may be slower performing these tasks. Your partner may wonder when to simply observe and when to help.
Spouses and significant others in the family often express frustration at not knowing how to interpret “on” and “off” periods of motor function. As one wife shared with her husband’s doctor, “It’s hard to tell when he really can’t do something, and when he’s using the PD to hand off the unpleasant task to me!”
Couples who manage best in the face of chronic illness begin talking together from day one about how the disease is affecting daily operations in the family and what each can do to make things easier. Care partners who manage best in the long run are those who learn early to be flexible, state their own changing needs clearly, and protect regular blocks of private time to meet those needs over the years. This is not selfish. It is crucial to the well-being of the person with PD and the family that the care partner maintain his or her own physical and mental health.
Caregivers play a dual role: caring for someone with Parkinson’s, and taking care of yourself. NPF’s Caring and Coping workbook is a comprehensive guide for
caregivers that contains tips and tools to make the caring journey as productive as possible with the least amount of stress. To order your free copy, visit
www.parkinson.org/books or call the NPF Helpline at 800-4PD-INFO (473-4636).
Some partners – and people with Parkinson’s – gain strength from becoming active in the greater Parkinson’s community. Many of the most powerful advocates for better services and more research dollars for PD are those with the disease and their devoted family members.
When you are ready to get involved in the Parkinson’s community, visit
www.parkinson.org/get-involved. There you will learn how to raise awareness and funds to help the 1 million people with Parkinson’s in the U.S. get better care and live better lives today.
Involving the Children
Younger families must deal with the unique issues of communicating the diagnosis and sharing the daily ups and downs of PD with young children and teenagers still living at home. It is important to consider how PD might affect your children and what can be done to continue living a full family life with PD.
Children will absorb the reality of Parkinson’s disease in the family “by osmosis” as well as assimilating what they are told directly. They know instinctively when something is not quite right in the family, whether it’s physical or relational. For example, they can likely sense your frustration with tremors or difficulty walking and are capable of both empathy and sympathetic offers of help. Whatever their ages, attempting to hide the diagnosis from children is usually a mistake. Vital energy used to keep the secret is better channeled into coping with the demands of maintaining a marriage, making a living, and raising a family.
Kids need reassurance that their mommy or daddy is going to be OK, even though there are problems that show up some days more than others. They need reassurance that you will “be there” for them, just like always. They might imagine something much worse than the truth, so you can explain that PD is not like the lung cancer a grandpa died from, and it is not contagious like chicken pox. Matter-of-fact answers to specific questions can help children cope with having a parent who may have special needs.
Download our fact sheet “Parkinson’s and Your Children/Teenagers” at
www.parkinson.org/library for tips and tools on sharing the diagnosis, maintaining privacy, and supporting your kids in their understanding and acceptance of the disease. You can also download a fact sheet to give to your kids to help them cope:
“My Parent Has Parkinson’s. What Does It Mean?”
Teenagers
What about teenagers – those young adults who may be grossly embarrassed even by parents who don’t have Parkinson’s disease?!
Sometimes adolescents can benefit from professional counseling to help ease the struggle of having a parent who is less than physically perfect. Still, it is important to retain key roles as the authority, model, and mentor, rather than attempting to be a pal with or confide in your young adult son or daughter.
Older teens may need assurance that they will still be able to go to college or that you do not expect them to be surrogate caregivers. On the other hand, a mature teenager can get great satisfaction from pitching in with chores or chauffeuring tasks that may once have been the sole domain of the parent with PD.
A Word about Stan
Wondering about our friend introduced earlier? He still has the wife, three kids, two dogs, three cars now, and a (lower interest rate) mortgage. Two years after diagnosis, he retains his job in engineering, and he received clearance last month to telecommute from home two days per week.
Ellen’s gone back to school to finish her degree and obtain a teaching certificate. Their oldest daughter Sherry just got her driver’s license, which is nerve-racking, but also adds another family member available for taxi and errand duty.
Stan’s neurologist recently increased the dosage of his dopamine agonist. They’ve discussed adding Sinemet to his regime, but Stan feels like he’s doing pretty well for now. His golf game has suffered a little, but not so much that he’s embarrassed to play. He feels better overall when he makes time to go to the gym twice a week.
Glossary
Acetylcholine: A chemical messenger in the brain (see neurotransmitter) that is involved in
many brain functions, such as memory and control of movement; it is released by cholinergic nerves.
Alpha synuclein: A protein in the human brain that is associated with the development of
Parkinson’s; it is the main component of Lewy bodies.
Atypical parkinsonism: A group of brain disorders that initially look like Parkinson’s disease, but
differ in the course of the disease and response to antiparkinson medications. The term is used interchangeably with Parkinson’s-plus syndromes.
Bradykinesia: The slowness of movement seen in people with Parkinson’s disease; one of the
four main motor symptoms of PD.
Cholinergic system: The system of nerve cells that use the neurotransmitter acetylcholine to
send messages.
Deep brain stimulation (DBS): A type of surgery used to treat the motor symptoms of PD. Dopamine: A chemical messenger in the brain (see neurotransmitter) that regulates movement
and emotions.
Dopaminergic medication: Medications that increase the level of dopamine in the brain and
are typically used to treat Parkinson’s disease (i.e., carbidopa/levodopa and dopamine agonists).
Dysarthria: A group of speech disorders caused by disturbances in the strength or coordination
of the muscles that produce speech as a result of damage to the brain or nerves.
Dystonia: Involuntary muscle contractions that cause slow, repetitive movements or abnormal
postures.
Festination: Short, shuffling steps.
Freezing: Temporary, involuntary inability to move.
Hypomimia: Decreased facial expression due to rigidity of facial muscles. Idiopathic: A term used to describe a disease with no known cause.
Levodopa: The medication most commonly given to control the motor symptoms of Parkinson’s;
Motor symptoms: Parkinson’s symptoms that affect movement, including tremor, rigidity,
bradykinesia and postural instability.
Movement disorder: A neurological condition that affects your ability to move.
Movement disorders specialist: A neurologist who has completed one to two years of additional
training in treating movement disorders such as Parkinson’s disease.
Neurodegenerative disorder: A disease characterized by the loss of cells of the brain or spinal
cord, which over time leads to dysfunction and disability; Parkinson’s disease, Alzheimer’s disease, and amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) are all examples.
Neurogenic orthostatic hypotension (nOH): Orthostatic hypotension (OH) is a drop in blood
pressure that happens within a few minutes of standing up. Parkinson’s disease and some other diseases can cause OH – in this cause, it is called neurogenic OH, since it is related to dysfunction of the nervous system.
Neurological disorder: A disorder of the brain or other parts of the nervous system (spinal cord,
other nerves).
Neuroplasticity: The brain’s ability to reorganize itself by forming new connections. This allows
the brain to compensate for injury and disease and to respond to new situations and changes in the environment.
Neuron: A specialized cell that transmits nerve impulses from one part of the body to another. Neurotransmitter: A chemical messenger, such as dopamine or acetylcholine, that transmits
nerve impulses from one cell to another, allowing them to communicate with each other.
Non-motor symptoms: Symptoms associated with PD that are not related to changes of the
motor system. These include pain, fatigue, anxiety, depression, drooling, sweating, urinary changes, heart palpitations, dizziness, and more.
On-off fluctuations: See “motor fluctuations.”
Parkinson’s-plus syndromes: Term used interchangeably with atypical Parkinsonism.
Parkinsonism: Broad term used to describe Parkinson’s-like symptoms (resting tremor,
slowness, poor balance, walking problems, etc.).
Postural instability: Difficulty with balance; unstable balance.
Progressive: A term used to describe a disease or condition that worsens over time. Retropulsion: The tendency to fall backwards.
Rigidity: Stiffness in a limb or joint.
Substantia nigra: A region in the brain where cells produce dopamine. Tremor: Involuntary shaking of a body part.
About the National Parkinson Foundation
At the National Parkinson Foundation (NPF), we make life better for people with Parkinson’s through expert care and research. Everything we do helps people with Parkinson’s actively enjoy life. We continue to bring help and hope to the estimated one million individuals in the United States, and four to six million worldwide, who are living with Parkinson’s disease. A wealth of information about Parkinson’s and about NPF’s activities and resources is available on our website, www.parkinson.org.
Here are some of the highlights of our organization:
• NPF has funded more than $189 million in research and support services to improve the lives of people with Parkinson’s. We continue to be a major funder of research programs. NPF’s Parkinson’s Outcomes Project, the largest-ever clinical study of Parkinson’s disease, includes nearly 10,000 patients from four countries and is designed to change the course of the disease.
• NPF Centers of Excellence – chosen from the top ranks of academic medical centers where dedication to exemplar patient care is paired with groundbreaking research – comprise the first international network to focus on how to improve care for people with Parkinson’s. The network includes 41 Centers of Excellence that deliver care to more than 50,000 Parkinson’s patients. We drive and set the standard of expert care in Parkinson’s through this network. To find out if there’s a Center of Excellence near you, go to www.parkinson.org/search.
• The Aware in Care kit is part of our commitment to helping people with Parkinson’s live well today and in the future. The life-saving kit provides people with PD and caregivers the tools they need to get the best and safest care in the hospital. Order